Sunday, March 31, 2013

I have to share a verse I read this morning from John 20:31 But these are written, that ye might believe that Jesus is the Christ, the Son of God; and that believing ye might have life through his name. He's speaking of the things that were written about Christ in the Bible and that not everything he did was recorded, but there is still enough to believe. And the best part, how do we have eternal life? through his name!

Yesterday my brothers and Dad came up to visit and take Mom home with them. Lexi is staying a few days. I got 2 of the tubes out so now I have one tube in each lung. We need to see if these lungs will seal off.

The swallow test went ok. Basically it showed the same to a little improvement from January. No penetration by any consistency of the wrong pipe. But it definitely continues to make a difference if I tuck my chin down and to the right as I swallow. For some reason I just don't feel that hungry most of the time and I feel like I get full fast.

I don't think there is much else to say. Enjoy your Easter plans and time with families. Above all rejoice that Christ was willing to give his life and then was victorious over death that we might be able to reign with him.

Friday, March 29, 2013

Derek had a better night. The oxygen came off and his pain pump is gone. He is now relying on oral pain meds oxycodone and tylenol. He's walked three times today and had a visitor from work. The complication today was the swallow test that Occupational Therapy did bedside showed he needs a more thorough swallow study done in radiology which is still supposed to happen today according to the nurse, but I'm starting to wonder. He cannot eat or drink anything until they get that done according to the hospitalist in order to be "safe". He has been coughing after each swallow which can be a sign of aspiration. I'm praying they don't mention a feeding tube. I believe if given time, he will be able to eat enough again. Coming out of surgery I don't know if the swallowing isn't working as well because of shortness of breath and pain or if he's a little nervous when trying to swallow, but pray for this to improve please.

Thank you and may the Lord and His suffering, death, and resurrection be remembered by each one of you this precious season.

Thursday, March 28, 2013

Wednesday night Derek slept pretty good, but woke to push the pain pump a few times. I arrived a little after 7a today (Thursday) and he was battling pain, but soon was "caught up" again. He ate oatmeal and chopped pears and some juices. He walked for the first time around 10am and did probably 30 feet with a walker thing called a podium which he could lean on for support and have all the tubes connected to the appropriate things on it (suction, oxygen, catheter). He felt good after that walk, pain-free for a time, and read a magazine. He walked again an hour later about double the distance and wanted to work on the laptop, but by the time mom went and got it at the guesthouse and got back he never did get to working. By the time we ordered lunch, he was showing signs of being really worn out and after the food arrived he didn't end up eating it. The respiratory therapist had come in and seen him take a drink and cough right after the drink. This concerned her that he might be aspirating which they don't want any of that. So, a swallow test is ordered for Friday morning and he was told not to eat or drink until that test.

The catheter came out, but he's not able to void, so it might be going back in. They've upped IV fluids to see if that helps. His mouth is really dry and we have to swab and sip water. His third walk was shorter and he was in pain on the right side where the tube is. He took an afternoon nap. This evening, they were able to get us moved to a private room which I really like, so I'm staying the night. He did want to check email around 8p...it's always a good sign that he's feeling ok when he wants to work a little.

Mom and I went for a long walk and ate pannekoeken for dinner while they walked Derek a 4th time and moved him. He was able to talk on the phone to the kids today and to Doug. It's about 9:30pm here and he's not quite ready for lights out. It sounds like we might have a visitor tomorrow and more on Saturday which will be nice. My parents are bringing Lexi up with them this weekend, and I'm really looking forward to hugging her.

Derek had Mennonite singers come by Wednesday evening and he requested When All Of God's Singers Get Home. It's a beautiful song.

Wednesday, March 27, 2013

We've been visiting with Derek, and he is still a little sleepy but doing well coming out of the anesthesia from the surgery. He is in his room with lots of tubes: catheter, chest tubes on either side, oxygen in his nose, oxygen monitor on his finger, and blood pressure cuff. Plus 2 IV sites that are not receiving anything right now. His pain is a ZERO right now (thankful for that!), and they will soon hook him up to a pain pump so he can run that when he does start to feel the pain. They are sure he will have some, but he's still under the surgery pain relief right now. Not eating/drinking yet until they release him to. Just wanted to give another update for the kids at Grandma Stoller's if nothing else. They are fine "doctors/nurses" and will want to know these details.

Derek is through with the lung pleurodesis procedures and biopsies. The surgeon informed us that there is cancer on the lungs which has most likely contributed to the lungs collapsing. I don't want to believe that the cancer has metasticized (moved to another location). The surgeon felt that the procedure went well.

There will be a pathology report in a couple of days confirming the type of cancer. At that time, they will suggest chemo treatment options. Radiation on the lung is not an option, because there are so many tumor spots.

We have agreed to have Derek's tumor/blood entered in a targeted gene testing program which is fairly new here at Mayo Clinic. It is in the Individualized Medicine division. This could help determine which chemo drugs to try. There are three different tests...one taking as long as 2 weeks, and another taking 3 weeks, and the third taking 15 weeks. We are only patient #12 here to go through this process, so there are not many statistics and certainly no promises.

We haven't seen Derek yet or received our room assignment, but we will be located on the Francis floor 5 at St. Mary's hospital, Mayo Clinic, for the next 5 days at least and probably more.

I trust in God Almighty who knows and sees all things, and He LOVES us more than I could ever love Derek, and that's a lot.

Tuesday, March 26, 2013

We made it up to Rochester without incident. It was slow going for an hour or so with solid ice on I-74 but once it cleared up, the roads were dry the rest of way. Thanks to Dad Sauder for driving us up. I had one MRI last night and the other ones this morning. I was supposed to have a PET scan this afternoon but at a Dr mtg in-between, he could tell my right lung had the weaker sounds. I had a little pain on the way up that made me wonder, but it's been really hard to tell what short of breath is. So I wasn't surprised when a chest xray showed that the right lung had collapsed. (Chest tube is currently in the left side) So I'm scheduled for tomorrow morning to have the pleuridysis done again to both sides. This time they'll make 3 incisions or so per side and stick a scope in so they can really look around. The surgeon will do physical abrations in addition to the talc. I'll be put out for all this. He also plans to biopsy one of the nodules that the lung xrays have been showing. So we'll finally know what that is all about.

Overall this is not a good step. But we are glad to be at Mayo where stuff just happens so fast. This doctor seems to know what is going on. He said 4-6 days in the hospital, but hard to say exactly for sure.

Thanks for all the prayers that have already been offered on our behalf. God is in control and we are not going to stop trusting in Him now. We'll keep you posted once we know more.

Saturday, March 23, 2013

Things are going pretty well at home. It's good to have the kids home with us for a couple days before we head to Mayo for MRI scans. Lainey grew up so much in the last 3 weeks. She's sitting up a bunch more and almost ready to crawl. We hope to go to church tomorrow at least in the morning and make it to Stoller Easter in the evening. Monday - Wednesday we plan to go back to Mayo's for regular followup scans and meeting with the oncologist there. Our plan is to drive up Monday morning and back Wed night.

We've got a home health nurse coming to check on me every couple days while the chest tube is in. It has sounded quieter (less air leaking) but Leann thought she heard a lotof air moving when I coughed this morning. I go back to the lung doctor on April 1, and have an xray to take a couple days before that. The air leak needs to totally stop before they pull the tube.

Wednesday, March 20, 2013

We finally got home tonight. I still have the chest tube and a pneumostat valve on it to vent any air that leaks. I have a number of restrictions on me for the next week or two. I'm not supposed to drive, go to work, or lift more than ten lbs. but it's still good to be home. Pray for Leann, we got so accustomed to having help in the hospital it looks a little overwhelming tonight. The kids are still gone so I hope that will be short lived. Well try to update everyone later once we have all the next weeks schedule sorted out. Thanks for your prayers and continue to pray my lung can heal and we can put this chapter behind us.

Monday, March 18, 2013

Things were going well yesterday. They pulled the tube after lunch. This morning I was supposed to get out of the hospital but the X-ray showed a little bit of air. So they ordered another X-ray for early afternoon which showed its continued to progress and the lung collapse is getting worse. So I'm staying and going back to the lab for another chest tube. They will then turn me on to heavier suction and give it some more time to stick. She said if they get this soon they shouldn't have to do the talc again.

Just pray for my lung and attitude. Thanks for all the cards, visits, and prayers. We feel them and appreciate it so much.

Saturday, March 16, 2013

We had quite a day. Our wedding party came at 4 this afternoon for a couple hours. Almost everyone made it. The same lady that did our wedding cake did a couple cakes. Mom Stoller made candies the same color. Leann and Cheryl were in their dresses. It was quite a time. Leann and I both thought this was maybe more special than going to Hawaii would have been. We sang together some of the special songs from our wedding.

Then Leann and a few of her friends went out for supper while I stayed at the hospital and grabbed a nap.

I woke up this morning at 3:30 with intense pain but they got it under control a little after breakfast. Most of the day I felt pretty good.

Overall, I feel really blessed and today was the best anniversary I can imagine.

Friday, March 15, 2013

The talc slurry was placed in the chest tube at 10:40a this morning. Derek felt some achy pain, so he was given fentanyl through his IV for that. He is resting comfortably now on his back. The schedule that follows goes like this...

11:10a. Move to left side
11:40a. Move to right side
12:10p. Up to chair, receive Motrin and norco for pain
12:40p. Take a short walk and then hook up suction for next 24 hrs.

Saturday at 12:45p unhook suction

Get 2 chest x-rays at different points to see how it's working. If it looks good, pull tube out and monitor for a few hours. Then, go home. I expect we might get home Sunday if everything goes well. A little 10th anniversary party is planned for us here at the hospital at 4p Saturday which we are looking forward to. We hope you all have a nice weekend! Our children sing in the church Easter program Sunday night, so they are looking forward to that.

Wednesday, March 13, 2013

I'm feeling better today. Leann and I talked this morning and I realized what had happened over the last couple days. I think I had given up in my mind and lost my positive outlook. It wasn't helped when before the tube insertion procedure the dr asked about a DNR order. It was something Leann and I had talked about before which wasn't hard then but telling someone else was hard. So Leann kind of set me straight this morning that I can't give up. Even though there are things I can't do, there are still things I can do. My mind is still working. I am not in any constant pain. I have many reasons to be thankful. I'm on a different floor this time but once again the cleaning lady has been an inspiration too. It's kind of amazing how someone doing the lowest job from mans perspective can be fully persuaded that God is in control. You couldn't have talked these ladies out of their faith if you had all day.

And then I've had a few visitors this morning and that always helps to get me thinking more about the future and less about my current challenges.

So thanks to all of you who haved prayed for us in recent days. May God bless you and just continue to pray that God will direct our attitudes and hearts through any difficulties that lie ahead.

Tuesday, March 12, 2013

We are back in OSF and another chest tube is in, larger this time with plans to have a pleurodesis procedure using talc to "stick" the lung to the chest wall. They are estimating we will be here until the weekend. Derek is down. Hard to find another way to say it. Please pray for his attitude. He doesn't want to be here, but God is faithful.

They tell him the goal for the inspirometer is 1,000 and he can only get it to 100....then 2 hrs later (on the suction), he can do 250.

Our biggest question is where his dry cough is coming from that seems to have set off this string of pneumothorax episodes. Still no answer for that. He has had a cough from New Years on. It became congested the end of January. The mucus cleared up with prescription cough medicines, but the cough continued and was really often and wearing him out this weekend while we were home. The cough completely stops while the chest tube is in. We believe the hyperbaric oxygen treatments could have made his lung susceptible to a pneumothorax, too.

We have mayo clinic appointments in 2 weeks (MRIs, PET scan, hearing test, 2 different oncologists- neuro and medical). Hopefully, we will get that answered. I feel like a detective these days.

Friday, March 8, 2013

Dr verma, pulmonologist, just pulled the chest tube out with 2 residents observing. It only took a second, and now we wait until around 430p to get another X-ray. We may get to go home tomorrow...depending. We appreciate continued prayers for Derek's lungs.

Thursday, March 7, 2013

We are still at OSF. This morning the X-ray of the lung looked good. It looks fully inflated. They have turned the suction off, water seal on. Tomorrow, we will have another X-ray. Thanks for your thoughts and prayers.

We sleep pretty good here. We are looking forward to singers tonight at 7. Derek's spirits have been up, and he has been walking with the walker a few times.

Wednesday, March 6, 2013

My left lung did not totally reinflate but it's pretty close, say about 90%. So Dr Verma decided to give it another day to try and inflate on its own before deciding to do surgery. My pain is a lot better today, we finally got on a regimen and that is helping. I made two short walks in the hall so that is a big milestone.

Thanks for everyone who has come to visit. In general I am feeling up to it. It does help my spirits to have plenty of people to talk with and Leann doesn't feel as bad leaving for a bit.

Wesley & Lainey came for a while this afternoon. It was good to see them.

Tuesday, March 5, 2013

As we prepare for bed, psalm 43, and verse 5 says "why art thou cast down, O my soul? And why art thou disquieted within me? Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God."

Today's report was that the lung did not stay inflated but collapsed again (pneumothorax) when the suction was removed from the chest tube. So, the suction was turned back on and we wait...the progression we are hoping for is:

1. 24 hours must go by on the suction before retrying
2. Chest X-ray to see lung looks good.
3. Suction is turned off and wet seal turned on.
4. 24 hours of wet seal to see lung hold to chest wall.
5. Another chest X-ray to see lung stayed inflated.
6. clamp the tube to simulate removing it.
7. Wait a few hours to see lung hold.
8. remove tube.
9. Monitor after tube is removed.

If at any point the lung does not inflate/stay inflated, this will have been the second trial, and we would proceed to meet with surgeon to discuss talc being used to "stick" the lung to the chest wall. This surgery is considered fairly small and is done using a scope.

So, I think that brings you up to speed. Thank you again and again for your prayers and love.

Monday, March 4, 2013

Thanks everyone for holding us up in prayer. I'm sitting up in the chair right now but it wasn't easy getting here. I still have a lot of pain when I try to hold any weight on my left arm. I've spent mostofmytime here laying in bed and trying to sleep between all the drs and visitors. It sometimes hurts to talk so I'm not always real talkative but enjoy visitors anyway.

The pulmonologist is the main dr in charge of my care. At least we found out today the Hawaii trip is off for now. She said I have to wait 6 weeks before flying. Leann and I are doing pretty good with this news since we are realizing this will be a bit of recovery and we didn't want to take a chance and end up in the hospital there. They have been taking X-rays every day and my lung is expanded like it should be. There is still though some air coming out of my lung which needs to seal off. Sounds like the earliest the tube would come out is tomorrow morning. I have to wait 24 hrs at least after the tube is out before i can come home. Right now I feel pretty patient, just hoping my lung will seal up on its own.

The last week has been harder on me. When you feel your body getting weaker, it's just hard. The thing I'm learning is how hard it is to write or admit this during the struggle. I want to wait till I've had a couple good days to update the blog. It seems like its human nature to have a certain amount of pride and good news is easier to report than bad.

Even before being in the hospital, I've felt my left leg getting weaker. I finished the oxygen therapy on tuesday this past week. It's hard to say if it helped. At least the swallowing did not get any worse, and maybe improved a little on liquids. My walking has been harder and I'm using the walker more.

But even with these challenges, I'm still trusting God. It would never do any good to get bitter. I just trust that God has some reason for letting all this happen. He is still in control. He knows the future. I can rest in that. My cousin reminded me that the Bible says that the Son intercedes for us and also that the Spirit intercedes to the father for us. So two parts of the three are pleading to the other on my (and your) behalf. I don't know that I really thought directly about that much before, but it is comforting.

As for prayer requests, please pray that my lung can seal up, that Leann and the kids can handle the extra stress, and that my attitude can be right and positive.

Saturday, March 2, 2013

It's morning Derek had a coughing spell and his left lung partially collapsed. He had shortness of breath, and we came to OSF ER where we've had exceptional treatment including a procedure to put in a chest tube to get the air out and the lung has re-inflated. The leak appears to have sealed again. He is at risk for this happening again, and the real problem come Monday will be determining why he has had this persistent cough for a month. The lungs show some nodules, very small, but new in the last year. We have a PET scan coming up at Mayo the end of March. it may have to be made earlier. Our Hawaii trip, I would say, is in limbo... We were supposed to fly the 10th for 10 nights. Pray for healing, no more lung collapsing, and calm for Derek. Love you all. Leann